Mirena, menopause and uti/urination

[Phase2]

Hi all had a mirena at the start of the year, horrendous insertion, so painful. Since then I seem to be having issues with peeing- currently needing to wee about four times an hour with constant low back ache. Had an awful uti over the summer which took ages to go, and then no antibodies in tests so couldn't have antibiotics any more (had two courses).
I'm so tempted to get it removed, it's for hrt purposes.

It might not be connected with the Mirena, UTIs are very common in perimenopause and it's possibly a coincidence. I've had Mirena for ten years, no issue, I've had a similar low level UTI for the past six months which I'm about to seek vaginal estrogen for. I wouldn't be willing to get rid of the Mirena because it's been great for the HRT aspect, I don't feel my UTI is connected to it, I think it's just another delightful side effect of peri.
Edit to add I've had some success with DMannose

Liking to try anything at this stage! Also @GoldDuster have saved some D Mannose tablets as a potential next step in my Holland and Barrett basket.
I'm trying to do one thing at a time kind of.

Removed mirena - it was a possibility as I'd found some correlation between higher ph balance and coils. Not evidence of cause but worth a shot

Vaginal oestrogen - has made a slight difference maybe in a week

UTI tests ongoing

Blood tests booked

I have a possible low thyroid (on medication) and am taking systemic HRT.

I really appreciate any and all ideas, it's very miserable to be reluctant to leave the safety of proximity to the upstairs loo!

DMannose really worth a try, came across this on a trip to Spain when I went into a pharmacy and they gave me a pack of tablets, kicking myself for not keeping the packaging, but I know contained DMannose 1000mg, plus uva ursi and about three other things. Three days worth of tablets and it cleared it up brilliantly. Have been trying to find since but just using straight DMannose until I do.

Thank you, I was given some last year in Europe but it didn't work for the active cystitis (had to see a doctor via the hotel and get antibiotics) but I've since read about it being good for maintenance and keeping things going well.

I had a kidney infection which appeared to clear up, but I still had the awful constant stinging, burning and crawling sensation in my urethra. Samples showed no infection. I lived with it for weeks, in completely misery! But that’s all gone now, symptom free. It seems to be a miracle cure, though I know the MN community don’t really believe in homeopathy, though ironically I discovered Cantharis because of a MN thread. Might be worth a shot for you

I'm just bookmarking this thread, I'm perimenopausal and had a Mirena fitted around a month ago due to very heavy periods and anaemia. Since it's been fitted I've been struggling with urinary urgency and itchiness and it seems to be getting worse not better. No pain thankfully which is something but it's just such a miserable feeling. I've had various UTIs and thrush over the years and this is similar but not exactly the same.

I'm not taking HRT yet so I wonder if this is the first thing I need to try. Solidarity to others struggling with this.

The only thing I found was mirena and natural ph balance (higher) being linked to utis - this was just a reference and not a conclusion at all.
Since I had mine removed I feel a lot better but I also started local oestrogen so the two may have had an impact.

@notwavingbutsinking treat this with caution, I am not sure how reliable it is.

Thank you very much @Phase2, I have come across similar information in my googling and I am wondering if it's the increase in progesterone without any accompanying additional oestrogen that is causing the problems.

It was fitted by our local women's health clinic and she was very keen to get me started on HRT based on my age (48) even though I have been lucky not to have really experienced any obvious menopause symptoms so far. Although saying that, I am now wondering if perhaps I was occasionally getting some very mild UTI type feelings over the past year. I think I definitely need to consider vaginal atrophy, although just typing that makes me feel about a hundred years old.

it just feels quite daunting when there are so many possibilities (is it a placement issue? Is it hormonal? Is it a UTI? Is it BV?...) and investigating each one in turn involves a battle with under resourced health services.

it just feels quite daunting when there are so many possibilities (is it a placement issue? Is it hormonal? Is it a UTI? Is it BV?...) and investigating each one in turn involves a battle with under resourced health services.

I agree I have just done things one at a time to rule them out.

My constant UTIs as a menopausal woman with a Mirena (and a fairly new sexual relationship) were fixed by Ovestin cream for my VA. When it was prescribed I didn't even know VA was a thing.

There is just no decent education out there for women on this stuff.

So I've sent a urine test off privately and seen a GP. I am really struggling to stay positive, the constant pressure to pee and discomfort is all encompassing and I'm avoiding going out.
GP says give vaginal oestrogen another few weeks and then review.

It’s like one step forward two steps back.
im on the maintenance phase of vaginal oestrogen. (About three weeks in total). I also tried a vaginal moisturiser and I’ve had a couple of better days but today back to constant full bladder, need to pee, never emptying my bladder fully (it feels) and little (sorry!) dribbles of pee after I’ve been.
backache increasing.
waiting for the review with GP and the urine tests. I’m thinking it’s probably vaginal oestrogen related at the moment.

So an update in case anyone is following. It came back positive for group B and the gp gave me antibiotics (reluctantly, to be fair as there were no other findings) which I thought made a difference but I’m back to full bladder feeling, no difference if I drink fluids or not, and intermittent raw and sore feeling as if my bladder is an open wound. No idea anymore if it’s gynae or urinary. I’m exhausted and in pain all the time, and so depressed.

I'm so sorry you're still struggling @Phase2 . I really feel for you. Did you get results for urine and vaginal swab both showing strep B? Was this the predominant organism (compared to lactobacillus)?
Once again you have my sympathy - it's horrible. Go easy on yourself. Xxx

Hi yes thanks for hanging in there with me Bertha I did urine only just due to cost and followed all the instructions to avoid contamination.
it was literally the only thing, after being left a few days so quite tenuous.
I’ve also started using the Squeezy app and have booked a pelvic floor assessment. I just feel desperate really. I have limited funds to pay for stuff so banking on a nhs referral.

So I have swabs to do (vaginal) and I’ve booked a private pelvic floor assessment. I’m so sore and in need of a wee all the time, backache, never completely feel I’ve emptied my bladder. My current quality of life is shit. I can’t plan anything fun, even the cinema feels impossible.

Hello @Phase2 . I'm so sorry you're struggling and I know exactly what you're going through. I can't help but think that you might have what I had which is aerobic vaginitis. I didn't have the classic symptoms of discharge etc but what I did have was a feeling of chronic UTI. I've been meaning to write up my story on my own 'chronic UTI thread' such that others can take something from it. I will try to do this soon.

The short version of my story is that I treated myself with fluomizin vaginally because no one would take me seriously. I then recovered slowly. I think vaginal estrogen also helped so keep up with that..I do still have some off and on discomfort but it is nowhere near as bad as it was. I think it is nerve pain as I suffered so long.

See what the vaginal swabs tell you. If it is aerobic vaginitis it is treatable even if medics don't recognise it.

I'm so sorry you're going through this. It's truly awful. At one point I resigned from my job it was so bad. Thankfully they gave me time off instead but I came close to losing my livelihood.

Xxxxx

Thank you @BerthaAntoinetteMason I feel like I’m losing my will to live over it. Constantly sore, needing to live in the loo. It’s like my entire thoughts are focussed on this.

Oh @Phase2 I know what you mean. I had some very dark times too. It's absolutely awful. It would be easier if it were just straight forward pain but the constant discomfort is torture. Xxxxx

Urgh so updating this (it’s like a personal diary but hopefully someone will find it useful). I’ve had two really good days and now back to constant need to wee. It’s like my bladder can’t hold anything and also thinks it’s permanently full. im shocked at how quickly I’ve become this unwell person from being ok .
anyway been advised to go back to daily oestrogen pessaries until it’s resolved. I can’t plan anything and I’m struggling to stay positive.
I’ve read online about using oestrogen cream externally but the GP says one or the other (pessaries v cream) and not a mix. I am reluctant to change to the cream as I’ve seen online it’s triggered additional vaginal issues for people.

More in my diary of woe. Had maybe five okay days since the end of Jan, pretty much every day is miserable and punctuated with either a need to wee or cystitis like feelings and soreness and backache. thrush treatment just finished after swabs.
I can’t really see a way to ever be normal again. Pelvic floor assessment was fine, normal ish. Doing Squeezy. Just depressed and not seeing any light. I just want to feel normal again, I can’t believe this is my everyday life now.

I'm so sorry @Phase2 . Did you ever get any vaginal swab test results? Xxx

Yes thank you @BerthaAntoinetteMasonfor checking in with me, it’s so isolating - none of my friends have this at all (one has frequent need to pee but that’s all). I’ve found some really overwhelming online stuff, and American sites are focussed on testosterone et . I had thrush identified and treating that did bring some relief.